Aa
Fatigue
I have been diagnosed with LymeDisease. I also have Severe Migraines and an Auto immuneDisorder, that makes you tired h
How long before the Doycllin kicks in and I begin to feel semi normal. Help!
How long before the Doycllin kicks in and I begin to feel semi normal. Help!
To comments on others' post about herx reaction.
Herx can be minor, or really bad. It can be just several hours . It can be like clockwork, same time everyday after taking antibiotics. If you experience that, it is pretty obvious it is herx reaction.
Sometimes it isn't that obvious.When I was on doxycycline I didn't experience clockwork herx reaction and improvements as I did with Rocephin IV.
Herx reaction signs can changes over the time. My herx reaction back in June is different in some way than what it is now with
Sometimes I can sleep through it, and sometimes I can't and I have to take several non-abx medications(pain killer, cold medicine, etc..) just to get through it. You can try detox approach.
Also sometimes it is hard to tell apart between herx reaction or slipping backward. Two weeks I had go to ER. Was it herx or slipping backward, or one of coinfection comes out to front? It could be all of above. I don't know.
You may have to keep track of symptoms.
So just be aware.
Herx can be minor, or really bad. It can be just several hours . It can be like clockwork, same time everyday after taking antibiotics. If you experience that, it is pretty obvious it is herx reaction.
Sometimes it isn't that obvious.When I was on doxycycline I didn't experience clockwork herx reaction and improvements as I did with Rocephin IV.
Herx reaction signs can changes over the time. My herx reaction back in June is different in some way than what it is now with
Sometimes I can sleep through it, and sometimes I can't and I have to take several non-abx medications(pain killer, cold medicine, etc..) just to get through it. You can try detox approach.
Also sometimes it is hard to tell apart between herx reaction or slipping backward. Two weeks I had go to ER. Was it herx or slipping backward, or one of coinfection comes out to front? It could be all of above. I don't know.
You may have to keep track of symptoms.
So just be aware.
I am vaguely aware that there are things to ease difficult Herxing ... but haven't looked into. Anyone?
I just googled
herxheimer reaction detox
and got a lot of hits, who knows how reliable, but fwiw.
I just googled
herxheimer reaction detox
and got a lot of hits, who knows how reliable, but fwiw.
Don't worry, there are a minority of people (I am a lucky one) that genetically don't detox we'll enough so for me the herxing is worse. Yours will most likely be as Jackie described above.
I just sent my fiancée an Internet explanation of a herxheimer reaction. It said, in terms he could understand, "getting worse before getting better"
I just sent my fiancée an Internet explanation of a herxheimer reaction. It said, in terms he could understand, "getting worse before getting better"
PS don't be afraid of the Herxes --- it's shorthand for Herxheimer reaction, named after the doc who first described them. A 'Herx' is a temporary worsened of symptoms as your body deals with clearing out the trash left over from the killed bacteria.
It doesn't last long -- at most a day or so -- and for many of us, it's not a huge deal, so don't worry, okay? Kind of like when you get a mild passing virus during cold season. If the symptoms are REALLY bad and you don't think you can handle it again, tell your doc and the doc may back off on the dose of meds you are on, to reduced the size of the bacterial die-off.
Very few people get hugely bad Herxes, so try not to worry --- I know how it is to be on the edge all the time, and then to hear that things can get worse --- AGGH!!!
But 'don't borrow worry' -- you'll be okay. Magnesium supplements are helpful, or a nice warm bath with Epsom salts (which are magnesium, absorbed through the skin) can be VERY helpful.
Don't. Worry.
(but I know that anxiety and worry are symptoms of Lyme ... it's a biochemical side effect of the infection. some have it worse than others; I never felt any worse on treatment than I did before treatment, and I'm a real lightweight when it comes to reactions.)
Don't. Worry.
It doesn't last long -- at most a day or so -- and for many of us, it's not a huge deal, so don't worry, okay? Kind of like when you get a mild passing virus during cold season. If the symptoms are REALLY bad and you don't think you can handle it again, tell your doc and the doc may back off on the dose of meds you are on, to reduced the size of the bacterial die-off.
Very few people get hugely bad Herxes, so try not to worry --- I know how it is to be on the edge all the time, and then to hear that things can get worse --- AGGH!!!
But 'don't borrow worry' -- you'll be okay. Magnesium supplements are helpful, or a nice warm bath with Epsom salts (which are magnesium, absorbed through the skin) can be VERY helpful.
Don't. Worry.
(but I know that anxiety and worry are symptoms of Lyme ... it's a biochemical side effect of the infection. some have it worse than others; I never felt any worse on treatment than I did before treatment, and I'm a real lightweight when it comes to reactions.)
Don't. Worry.
Rico is right, you should take a longer run of doxy but also you should take a cyst buster with it, like Flagyl. My LLMD had me do a rotation, I was on Flagyl 2 weeks and off for 2 weeks. Now since I have found out I have 2 co-infections, I became sicker and the medications changed.
Rico is correct, an LLMD that follows ILADS protocol is what is needed.
Rico is correct, an LLMD that follows ILADS protocol is what is needed.
Don't mean to just repeat what others say, but it is true that if you have had Lyme for more than a month, you are going to need months of antibiotics to kill all of it.
Do you mind if I ask what autoimmune disorder you have been diagnosed with? Or were you just told that generically by a doc who didn't know what you have besides chronic fatigue? I ask because like Mojogal, my Lyme mimicked MS, and eventually also IBS. I also had terrible fatigue and brain fog.
Lyme can definitely cause migraines. If you are having autoimmune-like symptoms and migraines, I highly doubt a few weeks of doxycycline will cure you. Doxy has actually been shown by researcher Dr. Eva Sapi to encourage the Lyme spirochetes to form cysts in which they are immune to abx and the immune system.
You will most likely need multiple and stronger abx. Only a LLMD who follows ILADS' protocols will do this for you. You can also ask at local Lyme support groups to find out who near you is good. The sooner you get the right doctor, the sooner you will start feeling better (aside from any herx reactions, of course!).
Do you mind if I ask what autoimmune disorder you have been diagnosed with? Or were you just told that generically by a doc who didn't know what you have besides chronic fatigue? I ask because like Mojogal, my Lyme mimicked MS, and eventually also IBS. I also had terrible fatigue and brain fog.
Lyme can definitely cause migraines. If you are having autoimmune-like symptoms and migraines, I highly doubt a few weeks of doxycycline will cure you. Doxy has actually been shown by researcher Dr. Eva Sapi to encourage the Lyme spirochetes to form cysts in which they are immune to abx and the immune system.
You will most likely need multiple and stronger abx. Only a LLMD who follows ILADS' protocols will do this for you. You can also ask at local Lyme support groups to find out who near you is good. The sooner you get the right doctor, the sooner you will start feeling better (aside from any herx reactions, of course!).
I love that diagonal reading thing your brain was doing, to pick up 'Med' from one line and 'club' from another. Sometimes I find myself gluing together two completely unrelated things because they happen to occur around the same time .... like a commercial on TV gets looped into my thoughts about someone I am writing an email to, and later I keep trying to figure out why a thought of one of them is triggering a thought of the other, and wondering how they could possibly be connected.
It seems to be stress-caused in these odd times we are living through. At least that's MY excuse, and I'm sticking to it. And will gladly loan it to anyone who needs an excuse as well. < : )
It seems to be stress-caused in these odd times we are living through. At least that's MY excuse, and I'm sticking to it. And will gladly loan it to anyone who needs an excuse as well. < : )
Welcome to Medhelp Calissa....and unlike my brainfog may have suggested whilst we are are a "club", surviving and conquering this insidious thing sure aint no holiday. I am pretty new here to, you will get wonderful advice from many people (especially Jackie and Rico), support and encouragement, the space and grace to ask what some people may seem irrelevant or even obvious without fear of judgement.
Keep us all posted how you are going with your treatment. Health and healing to you!
Keep us all posted how you are going with your treatment. Health and healing to you!
Sometimes I just love the different combinations my brain can create when reading with lyme brain fog. I just read this previous post of yours Jackie and my brain first of all came up with"Welcome to ClubMed!!" ......oh don't we wish. Hmmmmmmm....maybe in the future when we are all cured we could organise a "I survived Lyme Disease cruise!!". Now that'd give me a floodlight at the end of the tunnel.
Welcome to MedHelp -- sorry to hear you have Lyme, but welcome to the "club."
Unless your Lyme infection is relatively recent, a few weeks of doxycycline may not, in the view of MDs with more progressive thoughts about Lyme treatment, cure the infection.
The supposed standard treatment for Lyme is a few weeks of doxy, but there is a large group of MDs who disagree because of the long reproductive cycle of Lyme bacteria (like tuberculosis and leprosy, the bacteria are susceptible to antibiotics when their cell walls are disrupted while reproducing, and a slow reproductive cycle means fewer chances for the antibiotics to kill all the bacteria. Therefore Lyme specialists will usually treat for months, not a few weeks.
In addition, Lyme has a propensity to encyst in the body, and a combination of antibiotics is needed: one to break through the cysts, and the other to kill the bacteria inside the cysts. Lyme specialists know this, but not all docs do. Thus unless you are very recently infected with Lyme, a few weeks of only doxycycline may well not achieve a cure.
You don't say if your diagnosis of an autoimmune disorder is related to Lyme, but there is confusion in the so-called 'mainstream' medical community about why Lyme often seems to persist after short treatment. 'Mainstream' docs often attribute continued symptoms after a short treatment course of doxy to an overactive immune system reacting to a now cured infection, while Lyme specialists view it as uncured and persisting infection for the reasons stated above.
As mojogal notes above, Lyme ticks often (perhaps half the time) carry other infections such as babesiosis and bartonella that need separate testing and separate treatment. Lyme specialists know this; other docs, not so much.
I see that you are in Connecticut, which of course is 'Lyme central' in the US. The good news is that there are good Lyme specialists nearby, and you can get a referral by sending an email to
contact [at] ILADS [dot] org
and tell them where you are located and can travel to. ILADS is the International Lyme and Associated Disease Society, the main group for MDs who take a progressive view of diagnosing and treating Lyme and its co-infections. Columbia University also has a Lyme center that may or may not take patients or give referrals; I'm not sure, since it's a research center.
In your situation, I would consider a second opinion just to be sure everything has been detected, diagnosed and treated properly. Lyme will not go away by itself... and doxy alone is not, to my understanding, adequate or necessarily appropriate treatment for the co-infections that often come with Lyme, nor sufficient in an entrenched case of Lyme itself, for the reasons stated above.
Sorry to be downcast in these comments, but I would want to know these things if I were in your situation. Please let us know if we can help further. Take care, and take heart!
Unless your Lyme infection is relatively recent, a few weeks of doxycycline may not, in the view of MDs with more progressive thoughts about Lyme treatment, cure the infection.
The supposed standard treatment for Lyme is a few weeks of doxy, but there is a large group of MDs who disagree because of the long reproductive cycle of Lyme bacteria (like tuberculosis and leprosy, the bacteria are susceptible to antibiotics when their cell walls are disrupted while reproducing, and a slow reproductive cycle means fewer chances for the antibiotics to kill all the bacteria. Therefore Lyme specialists will usually treat for months, not a few weeks.
In addition, Lyme has a propensity to encyst in the body, and a combination of antibiotics is needed: one to break through the cysts, and the other to kill the bacteria inside the cysts. Lyme specialists know this, but not all docs do. Thus unless you are very recently infected with Lyme, a few weeks of only doxycycline may well not achieve a cure.
You don't say if your diagnosis of an autoimmune disorder is related to Lyme, but there is confusion in the so-called 'mainstream' medical community about why Lyme often seems to persist after short treatment. 'Mainstream' docs often attribute continued symptoms after a short treatment course of doxy to an overactive immune system reacting to a now cured infection, while Lyme specialists view it as uncured and persisting infection for the reasons stated above.
As mojogal notes above, Lyme ticks often (perhaps half the time) carry other infections such as babesiosis and bartonella that need separate testing and separate treatment. Lyme specialists know this; other docs, not so much.
I see that you are in Connecticut, which of course is 'Lyme central' in the US. The good news is that there are good Lyme specialists nearby, and you can get a referral by sending an email to
contact [at] ILADS [dot] org
and tell them where you are located and can travel to. ILADS is the International Lyme and Associated Disease Society, the main group for MDs who take a progressive view of diagnosing and treating Lyme and its co-infections. Columbia University also has a Lyme center that may or may not take patients or give referrals; I'm not sure, since it's a research center.
In your situation, I would consider a second opinion just to be sure everything has been detected, diagnosed and treated properly. Lyme will not go away by itself... and doxy alone is not, to my understanding, adequate or necessarily appropriate treatment for the co-infections that often come with Lyme, nor sufficient in an entrenched case of Lyme itself, for the reasons stated above.
Sorry to be downcast in these comments, but I would want to know these things if I were in your situation. Please let us know if we can help further. Take care, and take heart!
I am very sick with my illness so others can give you better explanations but you should google herxheimer reaction, many people feel worse, before feeling better. They get worse if they are killing the bugs, which causes toxins to go into the body before the body is able to get rid of them on its own.
In my own experience I was told I had lupus, RA, MS and other illnesses. The migraine and autoimmune illnesses can be Lyme in disguise as it was in my case.
Everyone is different but depending how long you have had lyme, could determine how long you are on meds. We're you tested for co-infections?
Keep us posted!
In my own experience I was told I had lupus, RA, MS and other illnesses. The migraine and autoimmune illnesses can be Lyme in disguise as it was in my case.
Everyone is different but depending how long you have had lyme, could determine how long you are on meds. We're you tested for co-infections?
Keep us posted!
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